Monthly Archives: September 2015

MEDICAL RESEARCH STILL HASN’T ‘SOLVED’ CHRONIC FATIGUE SYNDROME

Whatever they call it, CFS, ME, ME/CFS, CFIDS, SEID… they still have no answers I can believe. I can’t go to a doctor in my state (NJ), get tests which determine what I have and how severe it is, get a prescription for medicine which helps my symptoms (brain fog, pain, post-exertional collapse, swollen lymph glands, and perpetual exhaustion, among other things), and have a doctor titrate the right doses so I get better.

Or, heavens, get cured.

Grasping at the available straws

Vitamin B1 in megadoses (plus Celebrex, a cox-2 inhibitor used mostly by arthritis patients – which helps with pain) is the ONLY thing that has helped of the many things I’ve tried in 25, almost 26 years of having the disease half of all doctors (including my primary) still believe either doesn’t exist or is all in my head.

I’ve gotten used to that state of being – I can’t change it myself – and I refuse to let it take the rest of my life away from me.

For all the posts I’ve written about this over the last couple of years, type ‘B1’ into my search box. There you will find out where I got this idea, why it seems relatively safe, and how I’ve experimented with it.

How much is a megadose – and what do I actually take now?

I’ve been meaning to update the B1 information for a while, because the B1 posts (type B1 into the search box) are some of my most popular, but I was hoping to have a better report.

I tried a couple of things which I will discuss after reviewing my ‘protocol,’ but they didn’t work for me, so I have little new to report – except that I tried them and what they were.

I AM TRYING TO FINISH A BOOK – PRIDE’s CHILDREN, Book 1 is almost ready to publish – and moving slowly and relentlessly in that direction, but that’s why there haven’t been many blog posts.

And, curiously, I don’t seem to have much to blog about, except when, in the process of getting Pride’s Children, Book 1, ready to go up on Amazon, I run into a wall, and have to figure out how to get through it. AND haven’t seen anyone else solve that particular problem for me in a way I can use.

I seem not to think in blog-size chunks when buried in the minutiae of chasing plot holes and typos.

But I’ve wanted to do this update since I did the failed experiments.

Anyhoo…

Vitamin B1 Protocol I use (self-invented):

Why the change in benfotiamine? Because my original pills, which came from Source Naturals, had a bad batch, and the pills (150 mg.) would crumble when I set out my five doses for the day, something which hadn’t happened before.

We went around with the company who sold them to me, and they replaced them with another set of bottles – from the same batch, and with the same problem – so that was that. I can’t be without it (I think – I haven’t tried), and I can’t in clear conscience take pills that crumble into dust.

EVEN though the capsules may have the exact same dust – they were MEANT to be capsules.

I have that as a reason – your mileage may vary. For the year and a half before that, the Source Naturals were fine – and they probably will be again. I may try them again, but right now I need at least the illusion of consistency – I’m trying to finish a book!

So how do I take my doses? Note change:

On the basis of learning that the B1 is supposed to be a co-enzyme for the metabolism of carbohydrate (of which I eat as little as possible), I take one ‘dose’ with each meal or snack.

That’s it – simple.

I often find, at the end of the day, that I’ve omitted one or two doses – the brain forgot. I don’t notice enough of a difference to know it there is one – but then the thing that does the noticing is the same brain that doesn’t work.

The REST of the Protocol:

I’m taking 3-5 naps a day. Again.(See below on what I tried to get around that.)

Some of those naps I spend doing breathing and gentle exercises, stretches, and isometrics. Other times I crash into a deep sleep. It depends on many things, including whether I got a good night’s sleep, and whether I’ve been fighting to put the nap off as long as possible. The brain fog doesn’t help.

My naps are 35 min. with a timer. Except that sometimes I go a lot longer. I let myself sleep if I need it – nighttime sleep is erratic, but doesn’t seem to depend on how many naps I take, or how long they are. So I just listen to my body if I can.

Failed experiment #1: STIMULANTS

Long story, but I was getting useful effects from taking half a Bronkaid tablet (ephedrine as a bronco-dilator, OTC). I would take only a nap or two, and even thought my peak brain efficiency didn’t seem appreciably higher, I seemed to be in my best state for longer every day.

That was good – and I loved it, and I used the extra good time to make writing progress a bit faster.

The bad part was that 1) my blood pressure started rising, and 2) the muscle pains got horrific – razor blades embedded in my flesh.

After some internet searching, I found that the first effect was not uncommon in older people like me.

And the other one ditto – except that some people suggested drinking more water, and I tried that – but ultimately it didn’t work.

Horrific pain was the killer – I stopped taking the Bronkaid that way (off label – do not use unless you are prepared to accept the consequences, or don’t get them). I could NOT get rid of the pain, and spent a lot of time doing stretches, yoga, etc., and was taking way to many extra pain pills.

But it DID work, and I miss its effect. It was nice to be a bit more coherent, take fewer naps, and get more done.

Failed experiment #1: MANGANESE

Portkelly, who commented on one of my early B1 posts, mentioned that he takes 10 mg. of manganese with the B1 – I think every time.

THIS IS WAY TOO MUCH FOR ME.

APPARENTLY, if your system doesn’t process the manganese (source: the internet), and if you are older this cn happen, it ACCUMULATES – and again raises your blood pressure.

This getting old is not for sissies – when I tried adding the manganese, just 10 mg. a day (not a dose), MY blood pressure started rising.

As soon as I noticed it, I cut out the Mn – BP dropped in a week or so to normal.

So now I add ONE 10 mg. capsule to my pills ONCE a WEEK, so I have a small amount available (think I), but don’t have the BP effect.

NO RECOMMENDATIONS TO ADD TO THE B1

I am NOT recommending either of these experiments. I am reporting on them.

I realize I am in the older demographic – and probably have compromised everything, and so get the side effects.

But I cannot, in due conscience, recommend anything I’m not using, and that actually caused me problems.

Maybe somebody younger will be luckier.

Will I keep taking B1? YES – daily

The B1 has not had any side effects, and I still think it give me that remaining one daily period in midday where I can actually think and write.

When I’m finished with this book, I may try again to see if the effect goes away if I stop taking the B1 ‘doses’ up to 5 times a day, but right now it’s in the category of superstitious behavior needed to get me through to publication, and I’ve done al the experimenting I’m going to do for the foreseeable future – I can’t afford the side effects of my failed experiments.

So, yes, I’m taking it.

Is it working for me?

In general, comparing to before, I think it helps 15-20% part of the time.

But I also realize I’m a more mature writer, and have made the effort to be professional about it, getting to that chair every day to write.

I may be fooling myself, but it’s not as if anyone has come up with anything else that I can be sure works.

Be careful with all this stuff – pray for SOMEONE to figure this disease out. If we had medicines that worked for pain, brain fog, post-exertional collapse, swollen lymph glands, exhaustion – and all the rest of our symptoms – we wouldn’t be looking for anecdotes.

ARE YOU SURE YOU DON’T HAVE ANY PLOT HOLES? REALLY SURE?

Plot holes are especially hard to deal with when you are getting near the end, because they require a functioning brain to make sure the fix works, and I am even less likely than usual to have such an unfogged brain simply because of the pressure involved in making sure everything is taken care of, preferably BEFORE publication.

So it’s a bit of a catch 22 situation, and a place where the indie freedom to put off the launch another week or so is a Godsend.

I can’t imagine what it would be like with a deadline.

And someone like me should probably eschew using the pre-order feature on Amazon due to the likelihood of ‘something came up.’

I would imagine we first-timers should ALSO not push our luck.

Plot holes have a lot in common with potholes:

Somebody has to notice them, either by reading (driving) that scene, chapter, or set of chapters (street) that contains it – or by having someone else do it – and reporting back to the person in charge.

A systematic sweep of the work in question – this is known as beta reading or editing, depending on who does it – is preferable to having someone discover the hole by getting caught by it AFTER purchase, something which results in either broken axles or suspension of disbelief if they get big enough.

And, from what I’ve read, that leads to annoyed reviews. Not a good start.

Plot holes basically come in three sizes:

Small – affects a scene or chapter only, and is easily fixed within that scene or chapter without upsetting the external timeline between scenes (much). (Fill: asphalt)

Medium – big enough to require checking a series of scenes and chapters, so as to make sure the connections between the pieces have all been checked in the final product. (Roughly equivalent to paving the streets in my development.)

Really big – otherwise known as sinkholes, a big plot hole ruins the story in such a way that the whole thing is toast, and, depending on when you find it, will require a major rewrite, or the abandoning of the whole project. I hope not to create that kind.

Finding the holes:

I have enough distance from the writing as it has taken me forever to do some of the auxiliary tasks such as learning enough graphics to do a cover. Principal writing was completed on Palm Sunday, back in March.

So it is possible to read like a reader – constructing the story world out of the words as I go along, and listening carefully to when the mind says ‘Huh?’

Fixing carefully

The small ones get fixed easily as you notice them, because their spatial extent is usually obvious. Oops – this should be Saturday, not Sunday – is easy enough to change.

If you think about it, the medium-size ones are both the hardest to find, and the hardest to fix, because little pieces of old text have a tendency to hide in non-obvious places, such as internal monologue or someone’s reply to a piece of dialogue. So a great deal of care is going to be necessary in the finding and planning, but the implementation should be straightforward.

If you have Really Big Plot Holes, you may need professional help. Good luck!

The process of fixing the darn things needs to proceed in an orderly manner. Quick fixes, such as when my township fills the hole with some asphalt and a prayer, usually results in a repair which doesn’t last long.

I did a few quick fixes as I was writing Pride’s Children and posting them online every week, and only one or two people noticed: the fix was good enough to move on, or didn’t affect the story when the reader had to remember details from week to week. To be fair, I thought I had stopped, fixed the timeline completely, and tapered the edges of the fix into the ends and beginnings for a smooth continuum, and I had updated the calendar so I could proceed from there without worrying

I pride myself on my potholes: they are in the timeline, but are minor glitches, and they don’t make you question the story, just whether you remember correctly having heard a date before.

Where do plot holes like this originate?

I thought about that one for a while, and realized that, for the medium-size plot holes I’m dealing with, the hole came into existence because a particular piece of dramatic story worked so well in several different places that I had not done the hard work of deciding in advance where it would be BEST, and thought it would be obvious where the best location was – as I went along in the writing.

Example (but not in this book):

The easiest one I can think of is the typical timeline for when a woman tells the world she is expecting a baby. There is an obvious limited timeline between conception and delivery, and, for some women, the later dates make it fairly obvious that something is going to happen, but people are surprisingly bad at telling exactly how far along a pregnant woman is. And we hear stories on a regular basis of girl who delivered a baby at the prom – and claim that neither she nor anyone in the family had any idea she was in the family way.

I think there may be a good bit of denial or deception involved there, and the two or three cases in which I was close enough to have a pretty good idea, this was the truth. But even in those, families were not paying attention to loose clothing and moodiness because teenagers are often that way when not expecting.

In any case, having gone far afield with an example, the point is that the announcement of either a baby on the way or an actual baby changes a lot of things forever, and thus picking the right time and place has major consequences.

So it isn’t surprising, if a little one is on the way, for the writer’s brain to ask the question of how it would affect the characters and the story depending on where, when, and to whom the event is revealed – and for some of those to affect what happens in scenes which later turn out to be before anyone knew!

MY plot holes

The plot holes in Pride’s Children, Book 1, are not hard to fix – and I thought I already had fixed them – until reading in sequence had some of the questions I thought I’d already answered popping up again.

They are sequence events: something happens before something else when it was intended to happen after.

Not to worry.

Plot holes respond well to logic.

I have the calendar involved, a list of the scenes, the affected bits of text. I watch whose point of view is called for – and pay attention to whether something is internal or external to the calendar. And I try to see the story as something that actually happened – so a comparison to ‘reality’ helps check for consistency and order.

In addition, I’m asking myself to choose – which involves a bit of writing back and forth with myself, and deciding, on the page, which sequence will be true, and why. Then I record that decision in writing in the Journal.

Then I have to go in and make sure the fixes, where necessary, do not interrupt the flow. These are plot holes which must be fixed, but their previous incarnation did not interrupt the flow, so that must stay the same. Inconspicuous mends, feathered in.

Needless to say, I don’t want to have to do this again, so I’ve checked out a couple of other sequences – and most are just fine.

And I’m going at the fixes VERY slowly.

So if you wonder why I haven’t been writing blog posts, remember I have CFS and that makes it slow to fix things, especially when I have to be extra careful not to make things worse!

I’ll get there.

Next time – planning prevents potholes

I think I’ve learned a few things – make sure your calendar is set concrete before you start writing. Liquid is fine when you’re planning, but at some point you have to be able to write your initials in it, and have them stay.

Keep the calendar current, and change timing with great trepidation; the brain is happy to throw up new ideas – it gets bored easily.

But I will think several times before moving ANYTHING during the writing, no matter how much it takes me out of the writing: running into holes when you thought you were done is very discouraging.

Like any other writing problem, you can’t avoid all of them, so it’s important not to get TOO discouraged when you’re not actually the god of your particular universe, and can’t make things be exactly as written. Oh, well – that’s what editing is for.

Finally

It’s still far, far better to find them while you can fix things (and preferably before the POD Accept button is clicked) – no one will ever know.